Voices Inside my Head

Sometimes I swear Levi, our dog, can telepathically talk inside my head. This morning I woke up to someone calling my name and when my eyes opened all I saw was my husband sound asleep. I listened for the voice to call my name again but the house was silent. A dream, I thought, but it was so real---and so annoying because it’s a common way for me to wake up. I rolled over and there he was, smack-dab in my face, his little eyes peering over the top of the mattress. “Finally!” Levi seemed to be saying, “I need to pee.” The creepy part is the dog also seems to be able to tell time. It was nine o’clock. It’s always nine o’clock---on the dot---when I wake up this way.

How much easier it would be to live with someone with aphasia if we all had the ability to use mental telepathy. There are times when I think I can read Don’s mind but, of course, it’s not always possible to know if I’m reading him correctly. People often comment that I’m quick at figuring out what he wants to say. It doesn’t always seem quick to me. Sometimes, though, Don has repetitive themes he tries to talk about which make me seem more skilled at deciphering his speech than I really am. Sometimes it’s just knows a person for decades that give a spouse the edge in the game of peek-a-boob-words. (Come out; come out where ever you are! Talk to me!)

Don and I are lucky in some ways. His limited vocabulary is made up of nouns, which makes it easier to decipher his wants and needs. I feel so sorry for those people with aphasia who are stuck on the tiny filler words with no real meaning---or who have slurred or hard to understand speech. And of course those of us in the language disorders community know a few people who are stuck on the emotion driven swear words. Don is pretty good at swearing. He usually sings his ‘fucks’ at least one a day. It’s the only word I wish he wouldn’t practice.

Once in a while I’ll go to a stroke support website where I’ll read a few posts by spouses of people with aphasia. I’m always amazed at how little some of them seem understand about the disorder. The complaints about husbands who don’t say ‘I love you’ anymore bother me the most. I’m not talking about a caregiver longing to hear the words---we all do that from time to time. I’m talking about caregiver resentment because they think the words are being withheld on purpose. I want to scream at the computer screen: “Maybe he can’t get the words out anymore!” There could be a half a dozen reasons why the words aren’t forthcoming after a stroke.

I remember when we first started speech classes after the stroke and the clinicians would try to cue Don to say ‘I love you’ to me. He’d give them such dirty looks and I was sure I could read his mind. It was like he was sending me a telepathic message that he damn well wasn’t going to say those words just because some little girl fresh out of college wanted him to, even if he could have gotten them out of his aphasic brain. He was never the type to throw that phrase around lightly and never in front of strangers.

The first time when he actually did say ‘I love you’ after the stroke he was five years out and it was totally unprompted. He was sitting at the dinner table with a silly look on his face when the words came out of no where. I was shocked and it was the most heart-felt ‘I love you’ I’ve ever heard. He hasn’t said it since then but it doesn’t matter. Every day I hear voices inside my head and I’m sure they are coming from both Don and the dog. Mental telepathy is a wonderful thing. And if by chance mental telepathy isn’t real…well, I guess I’m just making up the words I want to hear. ©

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Lunch in Aphasia Land

It was a cold but sunny and beautiful day when we backed out of our driveway. Destination: out for lunch and to the post office. I asked my aphasic husband where he wanted to eat and as he often does he replied by using hand gestures to indicate the turns I’d have to make on the way to wherever it was he wanted to go. Those turns with varying lengths of straight-aways all gestured with appropriate sound effects for braking and speed didn’t help me understand. I named five or six of our favorite places and each time he’d say ‘no.’

“Have we been there in the last week?” I was trying to narrow down the field of choices.

"No."

“Have we been there in the last month?”

"No."

" In the past six months?”

“Yes.”

Oh, great that helped a lot. “Oriental?” I asked and I got a ‘no’ in return. The same negative response came for pizza, steak, Thai, breakfast, and hamburgers. At this point Don drew the type of food he wanted using his finger in the air.

“Square food? Toast with bacon and eggs?” I asked completely baffled by this latest clue. “Am I going the right direction?"

“No. Yes. No. Yes," he kept repeating. You'd think after all this time I'd learn not to ask more than one question at a time.

“Fine,” I replied. “We’ve got a full tank of gas. I guess we’ll get there before dinner." I was headed for ‘restaurant row’ a place where there are million places to eat within a five mile stretch. Eventually he gestured for me to turn into a shopping mall.

“Pee,” Don said which translates to: “Find me a place around the back where I can use my urinal.”

“Not today,” I said as I turned in. “You’ll have to make an appointment for tomorrow. I have an opening at 4:15.” I always give him a hard time about his ‘pee’ commands and he usually laughs at my tired jokes when I tell him things like he’s reached his quota of pee times for that day or last call for peeing was a half hour ago. Once I told him there is a cork in the glove compartment, "Use it!" Sometimes I even shock myself with what comes out of my mouth. Around the back of the mall, I stopped near a sign post hoping if someone comes along afterward they’ll think the yellow circle in the snow came from a big dog with a bad aim.

I got back on ‘restaurant row’ where eventually Don directed me to turn into the parking lot of a Mexican restaurant. I thought back to the clue he was trying to give me with his finger drawing in the air. Square food? What do they have at a Qdoba's that is square? I finally decided that he’s finger drawing dyslexia and he meant to draw a circle for a taco salad which is what he usually orders. But in reality it’s not unusual for people with aphasia to come up with what I call false clues. In their brains they are searching for the right word or gesture but all they can come up with is a category of similar words, one of which is the word they are trying to communicate. Round, square, triangle---they’re all shapes and ‘square’ was the only word Don’s aphasic brain could express on Saturday when we had lunch in Aphasia Land. ©

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Wayward Husband

When my brother was a toddler my mother kept him in a harness with a leash attached much like the modern version in this photo. The only difference was my brother’s leash was a lot longer and using them on a child back in the 1940s didn’t raise eyebrows like they occasionally do now. No one called them ‘cruel’ or ‘demeaning’ or thought they stifled a child’s nature curiosity. My brother needed to be leashed when my mom took him shopping. He was always getting into trouble doing things like prying up floor registers to shove the cat into the ducts. Once when he was three he got up early in the morning, stripped off his pajamas, put his Robin Hood hat on and went for a walk stark naked. A police officer brought him home to my still sleeping parents.

I was reminded of all this today when I took my husband to the bookstore. It’s one of those large yuppie places with a Starbucks inside and overstuffed chairs where you can curl up in front of a fireplace to read. It’s one of our favorite Sunday morning stops and I don’t ever want Don to get banned from the place like he was from a grocery store in the area. I knew we were headed towards trouble when we got to the door and several customers coming out held the double doors open for us. Don, in a deep bellowing voice yelled, “Oh boy! Oh, boy!” In aphasia speak that’s as good as saying, “Thank you for your kindness.”

As I often do when we go some place where he really wants to go I reminded him that he needed to use his inside voice and he sang his Okay Opera back at me: “Okkkkaaayyy! Okayyyyy! OH, oh, ooooh kay.

“Next time we’re planning to come here,” I teased, “help me remember to cut your antidepressant in half.”

He wanted a coin magazine. We found him a coin magazine. He wanted to look at a book in the art section. We found him the book. All the while he’s ‘oh, boying’ this and ‘oh boying’ that at the top of his lungs. People are looking at us. Don didn’t care. He was the center of attention and he loves that. I was thinking maybe next time we come to the bookstore, I’ll take Don’s antidepressant.

Finally I decided to take him to the coffee shop, get him a cappuccino so I could go off to the bathroom and maybe browse a few books along the way. When I came back Don had managed to table hop his wheelchair over to where two girls in their twenties sat.

“Are you lost?” I asked him.

“Beautiful, beautiful” he replied as he pointed to each girl in turn as if he was introducing a Marcia and Mary. Then he pointed to me and I held my breath until he said, “Wife.” He’s never done it, but someday I half expected him to introduce me as ‘homely.’ But his language problems still have him categorizing all women as cute or beautiful and he doesn’t hesitate to let strangers know which category he’s files them in.

On the way home I decided that rather than a leash hooked up to the back of Don’s wheelchair maybe I’ll see if steering wheel locks will work on wheelchairs. If they do I could say, “Sit, stay!” knowing when I come back my wayward husband will be right where I left him. ©

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My Facebook Page

It's a new year and with it came a promise to myself to get more active on my Facebook page. I’ve never particularly enjoyed or understood Facebook. I want layouts and colors to play with. I want more room to ramble. And I don’t like strangers showing up in lists of suggested friends. That’s creepy! But Facebook is Facebook so I decided to take the proverbial bull by the horns and figure out why it’s so popular.

After opening my Facebook page, I sat in front of the computer screen a full five minutes before my fingers made contact with the keyboard. And what came out after that long contemplation?---something thoughtful or deep to put on the ‘what’s on your mind’ line? No. My fingers typed: Why don’t angle worms freeze to death in the winter?

Where those words came from, I don’t know. I get loony that way from time to time, but the words were “shared” before I could think of something less lame to say. I waited. I waited fourteen hours and none of my 23 friends had an answer for me. No reply of any kind came back! Not one person was concerned for my mental health or for the worms outside in the frozen Michigan winter, for that matter.

I’m not a patient person so googled my question and to my shock there really is an interesting answer. “Angle worms,” according to John Johnson, “will begin hibernation with its tail in its mouth. It will then eat itself through winter right down to the last digestive tube. A 3-inch angle worm will decrease down to 1/4" over those months. Leaf worms, on the other hand, hibernate together in a large mass which looks like the inside of a golf ball.”

I’d share my new found knowledge with my Facebook friends but angle worms have survived for centuries without human sympathy for their dietary needs in the winter which leads me to my the other New Years Resolutions. Lose some weight. How I can type that resolution with a straight face while munching on a piece of Hershey’s dark chocolate is beyond explanation, but doing so has given me an idea: We can learn from the angle worms. We can live off our own body fat. So tonight when I go to bed I’ll attempt to sleep with my toes in my mouth. If I can extract some fat off my body to sustain me though the night I will finally have a reason to like my Facebook page. After all, it was because of Facebook that I came up with this bright idea. ©


John Johnson's full article on angle worms.

Another New Year, Another Resolution to Break

I started keeping diaries when I was seven or eight years old and I didn’t stop my daily recordings until I was in my late twenties. I guess I thought I’d grow up to be someone famous like my ancestors---James Otis Jr., Mercy Otis Warren, or Amelia Earhart---and in the distance sea of humanity someone would care about the naïve and disjointed ramblings of my youth. I’m nearly seventy now and I’ve barely read about the American Revolution let alone done anything as history book noteworthy as James Otis, a patriot and friend to Thomas Paine. Nor have I ever been pen pals with someone as famous as Abigail Adams or written anything as important as the first history book on the Revolutionary War like Mercy Warren did. As for Amelia, aviator extraordinaire---God, I’ve been afraid to get on an airplane every since I did it once and survived the ‘trauma’ back in the 60s. And the most adventurous thing I’ve done in recent years is to walk down our hilly driveway after an ice storm to get the mail. I’m such a disappointment to the little girl still deep inside me.

Even after I stopped writing daily diary enters I’ve still been relatively faithful about doing a list of New Years resolutions at the beginning of each year with a few paragraphs added updating my life’s journey This is my 2010 entry:

I woke up New Years morning with a dream still hanging on the edge of consciousness. I was lost and looking for an apartment where I lived. Being lost has been a life long reoccurring dream for me. Sometimes I'm in a school and I’m late for class. Sometimes I’m lost in the streets looking for my purse. Sometimes I’m lost and looking for a door out of a house of mirrors. There’s a dozen versions of my ‘lost’ dream. They say that being lost in a dream is really about the anxiety of leaving something familiar behind or about losing something of value. I can buy those theories as an explanation. But sometimes I have dreams that keeping me thinking all day long: Where the hell did that come from!

What made my New Years dream so different from the generic versions is what I was carrying around. While I was lost and looking for where I lived I ran into someone who asked me to baby sit their newborn. I said “yes” and then ducked into a copy center, stuck the baby in a copy machine and made myself a living, breathing baby of my own. Always a detail person, even in my dreams, I put a check mark on the forehead of one of the babies so I wouldn’t get the copy mixed up with the original then I continued on my way, looking for where I lived. Okay, I don’t know why I’m recording this for my infamous hereafter but what the heck, I’m old so I can get away with doing irrational things.

Now on to my New Years resolutions, most of which are pretty universal: Lose weight, get more physically fit, and finally get an accurate count on the number of legs on that centipede who lives under our filing cabinet. In addition I’d like to get back to blogging more often because I’ve always found writing to be therapeutic, and I’d like to stop hanging around a particular political forum that has been taking up a lot of my time this winter. Being there is like being thrown into a modge pit full of angry Hell’s Angels and that’s no place for an elderly woman carrying around a cloned copy of a newborn baby with a check mark on her forehead.

Happy New Year!

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My Christmas Letter

Merry Christmas and Happy Holidays to any cyber friends I may still have left after such a long absence from Bloggers. I wish I hadn't neglected my blog for so long but I've been busy with life this past summer and fall, and this winter with posting on a message boards where I enjoy debating politics and other controversies. Anyway, below is the Christmas letter that went out with our cards this year.....

Writing Christmas letters, for me, is like going to the dentist. You know it’s a good thing to do---well, some etiquette experts claim they are tacky but who listens to them outside of Washington D.C. and New York City---but the process is often tedious.

Speaking of dentists, going through our appointment book in preparation for writing this letter, I discovered that between the two of us Don and I went ten times this year! A bummer statistic when you factor in that we lost our dental coverage due to GM’s bankruptcy. But the really scary statistic is that we’d also been to other doctors, hospitals and therapy appointments a combined grand total of sixty times in 2009. And that doesn’t include the months of January and February. For some reason I can’t fathom, I tore those months out of our appointment book. Senior moment? Boring months? Secret life I didn’t want anyone to find out about should I die suddenly? I don’t know but I’ll probably spend the rest of December trying to remember.

To be fair to all of you younger people reading this letter and shuddering that you, too, might be spending your retirement years in the waiting rooms of health care providers, let me explain that my knee replacement took up forty of those sixty appointments. Hint: If you have surgery, don’t pick up an infection in the process. For a while I was taking so many antibiotics and steroids that every night I’d turn off the light while standing in front of a mirror to see if I glowed in the dark yet. It never happened but it was easier to worry about that than to fret about the possibility losing my leg. Okay, so I’m being a drama queen. It wasn’t that bad of an infection, but in my defense when a doctor mentions taking your lower leg off as a worst case scenario the other scenarios fall on deaf ears. I’m fine now, by the way, and pain-free for the first time in years.

Don is doing well, but he does have a new medical issue added to his list things he’d rather not have to dink around with---sleep apnea. But he couldn’t have just the ordinary kind. The sleep specialist says his type affects only three percent of those with apnea and it’s caused by a problem in his brain. He’s only had his two machines---one being oxygen---a couple of weeks but already I can tell he’s getting a better quality of sleep. I need to find him a new hobby, though, because I’m not used to having him up so early in the morning spoiling my treasured Hour of Total Quiet and Solitude.

Speaking of quiet and solitude busters the joy of our lives, Levi the schnauzer, is doing well. He’ll be two in January and is trained to take Don’s socks off at night and not trained to stay out of my mother-in-law tongue which he uproots weekly. I’ve seen these plants listed on the web as both toxic and non-toxic to pets. Thankfully, we seem to have the latter rather than the former variety. But if anyone has any Cesar Millan type tips for breaking Levi’s Sansevieria fetish please call before my Dust Buster dies.

In addition to the Mickey Mouse stuff mentioned above, 2009 has been a hoe-hum year. Or to be more honest, we’ve had better years----the years when we didn’t have to worry so much about issues beyond our control like the country’s and GM’s ability to come back to life and prosperity again. (Don might like being a greeter at K-Mart, should he lose his pension and have to go back to work, but I’d look lousy in their red vests.) Hopefully, the New Year will bring renewed hope and happiness to all of us. In the meantime, have a great holiday season!

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Catching the Caregiver Back Pain Train

I'm just returning from a two week pity party. You know the kind where you don't think you can handle one more metaphorical---or real, for that matter---hangnail. Giving myself a sharp "get over yourself, everyone has problems" usually keeps pity parties off my property---I'm generally an upbeat kind of person---but not this time. This time, four out-of-place vertebrae were playing sadistic games with the nerves running down my leg and they threw open the front door inviting the pity party pack to camp out in the living room. Woo is me! The cry fest started and the tears were only interrupted with occasional outbursts of succulent statements like: "I can't take care of us like this," "Oh, crap!" and "where is a nursing home when you need one?" I even cursed Don and myself for not having the foresight to have a few kids that we could guilt trip into coming over to help their old folks out in our time of need.

The only thing I was able to accomplish these past two weeks is to drive myself five times to the nearest chiropractor, shove simple foods like cereal and TV dinners towards Don, and let the dog outside almost as often as he needed to go. (And wouldn't you know it, my back problem started the day after we had the carpets professionally cleaned.) Heck, I was in such bad shape that I couldn't even kill an ant that was scouting his way across the bedroom in search of a cozy little place to relocate his colony. All I could do is hope he'd scouted his way half way up a wall where I could assassinate him without bending over. He was a smart little bugger. He never did get within my kill zone, but the gods of small favors did send Levi, our curious wonder puppy, to play the poor ant to death.

Thankfully, the pain is less frequent now and not as intense and instead of longing for that nursing home where all our needs could be met I dream of assisted living where someone comes in do the laundry, see that we eat and are not lying in bed bemoaning the fact that the bathroom is twelve HUGE steps away. I'm making progress. Next week I hope to be confident, again, that I can manage our lives with the decorum of a happy, in-charge woman who is not ready to throw in the proverbial towel.

Caregivers and back pain go together like peanut butter and jelly. Or so I've been told. I don't know why it took me so long to admit that pushing nearly 300 pounds of man and metal chair around has taken its toll on my already aging and not so beautiful body. So next week in addition to playing catch-up for the time lost to the pity party and pain I start physical therapy to learn how to minimize lower back strain. In the meantime I'm armed with my new best friends---the 48 inch body pillow and the handy-Danny PosturePro lumbar support. The first time I climbed on that pillow, face down with all four limbs hanging off, I audibly sighed and thought there really is a light at the end of my caregiver, woe-is-me tunnel and its not a train coming full speed ahead. ©